When I was diagnosed with Ankylosing Spondylitis in 2013 I faced a dearth of information I felt I could trust. I was skeptical of my doctors as well as what I could find online from resources that were supposed to be accurate but weren't. Then I found the Spondylitis Association of America. The staff and the website were and are easy to trust and navigate, and I know that the resources and information were and are reputable and up-to-date. I have even become friends with some of the staff through the years. I refer people to the SAA website all the time through my blog (www.beingcharis.com) and individually. I am also a volunteer support group leader (one of many SpA support groups sponsored by SAA across the USA) for people with spondyloarthritis and am proud to represent the organization in that small way. The SAA seems to balance a tricky mixture of good relationships with patients, researchers, pharmaceutical companies, and more with grace. I can't imagine living with Ankylosing Spondylitis and not having the SAA to turn to for advice, research reports, seminars, opportunities to engage, support for patients like me, and trusted current news and information.
I am biased - I have been a contributing member of SAA for 20 years and joined the staff 1 1/2 yrs ago. I have an MBA in non-profit management and have been honored to work at many amazing non-profits over the last 25 years. So, from an inside, outside and professional viewpoint, SAA is a truly wonderful organization. EVERYONE on the staff is professional, dedicated and knowledgeable. SAA stays focused on the mission with every decision - to be a leader in the quest to cure AS and related diseases and to empower those affected to live life to the fullest. 2.7 million people live with SpA. Yet it is often an invisible and lonely disease that does not get the attention & funding that other issues get. With a relatively small budget -all from donations- the staff and volunteers produce high quality programs and continuous support. SAA is behind the scenes everyday pushing for advancement in the search for cure and care for people living with SpA. In this age, with so much mis-information circulating, SAA is a beacon of correct information. It's such a blessing to be a part of this team. When people are diagnosed, it is the SAA that provides an opportunity to meet others with AS. It was & continues to be the SAA that provides the information needed to manage the disease.
As a longtime employee of the Spondylitis Association, I may be biased in my opinion but I hear everyday the firsthand outpouring of gratitude from the people who turn to SAA for information, resources, support, and sometimes just someone to listen who understands what they're going through. Knowing that the organization is making a difference is a powerful motivator and all of us here are honored to do our part for the spondylitis community.